.·:*¨¨*:·..·:*¨¨*:·.INTRODUCTION THREAD.·:*¨¨*:·..·:*¨¨*:·.

Posts from Jan. 1, 2018 to the present. Plus important announcements. (ICD warning sounds)

Moderator: Moderators

Post Reply
User avatar
Posts: 290
Joined: June 12th, 2006, 7:14 am
Location: ocean isle beach NC

Post by gatornc » June 17th, 2006, 5:47 pm

HI everyone,
My name is Sean, I'm 38 years old. I have a wife and 2 wonderful kids. I'm still disabled, but I have a littel side job I do moving animals that become a problem, Alagators, raccoons, snakes, foxes,etc.. I live in Ocean Isle Beach, NC. Thats right on the NC/SC state line. I started having a problem with A fib some years ago, but last year I had a run of V tach. They wouldn't let me leave the hospital until I had a Saint Jude defibulator put in. I have had about 6 or 7 shocks now, and we have done 1 lead revission. Everything so far has been going well. I'm glad to meet everyone and hope to become a friend of your as well.


Posts: 2521
Joined: June 21st, 2006, 5:30 pm
Location: Big City, North Carolina

Post by Kat » June 22nd, 2006, 12:25 pm

I am Kat, a 42-year-old mother of two wonderful teenagers and newly diagnosed with a congenital heart condition that leaves me at high risk for sudden heart failure. At least now I know why I was feeling so light headed and my heart would race. My family history of sudden death and the Ventricle Tachycardia I have been experiencing has lead my Cardiologist to recommend I get an ICD. I have not had the implant yet, but found this group while I was doing research.

After the initial shock (pardon the pun) of the news, I reacted the way any true southern woman worth her salt would have... I went out and got a new hairstyle, bought that living room set I have been eyeing and then began doing some serious research. With the help of my fabulous boyfriend, I have done a great deal of reading and I think have come to terms with my future. Flying will be an adventure, shopping around anti-theft devises may suddenly be interesting and I will have my own personal medical center with me where ever I go. Things could be worse.

My first big fear is that the doctor will not let me scuba dive any longer. It was the first question I asked when he delivered the news. He has said that he thinks some of the shallow dives my be okay and is researching that to be sure. I remain ever hopeful.

As with most things in life, I am trying to face this with humor and grace. I told the kids I would now be Bionic Mom, able to say no with bionic force. (insert bionic sound effect here.... No, no, no, no, no, no) They are unimpressed. :)


Ed note: From the left, above. Kat's son Justin, her mom Pat, Kat, and daughter Jessica
~Kat - Hypertrophic Cardiomyopathy
-That which does not kill us can really mess up our hair!
-Having one near life experience after another.

Intro post: http://www.icdsupportgroup.org/board/vi ... 5694#p5694


Post by Jennie » July 20th, 2006, 3:22 am


Finally got round to leaving a message! Great to "meet" you all, I am 27 and live in Surrey in the UK, I was born with congenital heart disease and have had 3 operations so far (4 if you count the ICD) and countless procedures.
My heart is on the wrong side, not too sure where it actually is but its not where it should be, I think it is in the middle but it depends which doctor you speak to. I also have Congenitally corrected transposition of the great arteries, pulmonary atresia - had a homograft put in in 1988 which thankfully hasn't needed to be replaced yet. I also have a leaky tricuspid valve and my left ventricle (which is technically the right) is weakened and not working brilliantly. Also I have atrial flutter/fibrillation (again depends on who you talk to) and ventricular tachycardia.
I am on sotalol, lisinopril, warfarin, digoxin and fruesamide, I was on amiodarone but made such a fuss they took me off it and I have no intention of ever going back on it again.
I had the ICD put in in May this year, it took just over 7 hours to put in but it seems to be doing a fab job.

I am signed off work but do work part time in a vets as a receptionist and help a friend of mine with her horses. I used to work with racehorses and loved it but I can't do it anymore.
I absolutely love to exercise (obviously within my limits) so as long as I can do something everyday I am happy.
I have a fab soppy golden retriever who lives with me and is my best friend and 2 cats who live with my parents.
I have spent my whole life just getting on with it and when things have gone wrong in the past I have just taken it in my stride but the last thing, the V Tach really knocked me back and I couldn't cope but since having the ICD things are looknig up and I feel much better and it is great to find a website with people who understand what you go through.

Sorry for waffling on :oops:

Jennie :D


Post by Darren » August 5th, 2006, 10:43 pm

My name is Darren and I am married to Saffron (purplecrocus). Saffron's heart issues began in February, 2006. She went to the doctor due to severe shortness of breath. She was diagnosed with Dilated Cardiomyopathy and had an ejection fraction of somewhere between 10 and 15 percent (we were told it should be 55 percent). She was admitted to the hospital for a few days and then sent home with a bucket load of medication for Congestive Heart Failure. After 3 months, her ejection fraction improved to about 25, but she still had abnormal EKG's. She was recommended for an ICD and implanted on June 13, 2006. I have three wonderful daughters (yes, I am REALLY out numbered - even our dog is a girl), ages 17, 10, and 7. I like to ride my motorcycle and make lots of noise with my electric guitar (maybe someday I should learn to play it, huh...).

- Darren



Keith of WI

Re: Introduction Thread

Post by Keith of WI » August 5th, 2006, 10:59 pm

icdadmin wrote:Use this thread to introduce yourself at "ICD Support Group".
Just to let you know I'm around. I'm Keith of WI, USA

What brings me here, well to make a long story short, had High blood Pressure much of my life, a silent heart attack in or before Nov of 1989 no treatment done. Just as I look back now got a little winded going up the stairs. Thought maybe a touch of cold or flu or something. Massive attack in Nov of 1990, From the silent attack the heart tried to fix itself and back fed past the block from the other main vein or Artery on the left front of my heart. So the second one was different I felt pain, tried the anti-acids, called my reg Doc, he suggested more anti-acids, finally said go to the local ER. "Don't drive yourself!". None of their tests showed any heart related problem. Wanted to send me home. I said to much pain, find some good pain killer and let me spend the night. they found a bed for me, in the morning hooked me up for an EKG, my doc walked in and ask "How you doing this morning?" told him "I feel about the same as I did last night!" The next I remember is about 4pm, don't know if same day or later I was having a heart Cath done. This blockage took out most of the tip and lots of the left ventrical blood flow. Well they didn't do open heart at that time, so transfered me to a nearby hospital did.

Was tranfered by ambulance there for emergency surgery. Signed papers, and was on my way to operating room. I know very little details about my stay, other than they did a double by-pass to repair the 2 blocks. Had a hard time recovering. My heart at the time I had a ballon pump to move enough blood through my system. If you don't know the ballon is inside your heart and pulses with each heart beat to help move more blood. Don't know how long I was in there(Recovery) but had the pump and breathing machine on, felt I would have better abilities if I had died. (with a smerk), couldn't talk, move or even write at first, just blinked my eyes to acknowlege some things. After Staples out and a month of rest started rehab. Was all the way up to 40-45% EF after rehab. Sure didn't feel that great for me. Took me about 5 years to feel like I could get on with my life.

2 lead ICD in April 2005, Felt weak and out of breath, Went to ER, found more problem, didn't think I could live a flight for life to the Milwaukee VA hospital(about 100 miles away) Put me to sleep and did a heart cath in the morning EF about 10%, Talked to me about a 3 lead ICD in the afternoon, but by morning changed mind to just do 2 lead instead. Not sure why the change. Might have been my poor condition. I felt improvement, was worth the surgery.

Was just out of wind all the time. Started getting less get up and go. Couple more trips to the ER lead to more tests, water retension, CHF, etc. Decided that I needed CRT (Cardic Recyncronization Theripy). Changed out for a 3 lead on July 17-19, 2006. The reason for the change was mainly because I now need resyncronization therapy.

Will fill in more details as time permits about my headaches I gave the staff during Hospital stay.

Whew, did I give them headaches! I guess I was to relaxed! Got to the Hospital in time to get prepped for the surgery. Settled in my room, took bloodwork, everything like clockwork. Then the IV with anti-biodics (had to be in left arm)first 2 tries didn't work(blew the veins) 3rd try, great worked great in the room, on the way to surgery it blew also. Tried 2 or 3 times in the surgery room(Cath Lab) Blew right away. Dr. Marriano said no big problem we can just follow the other leads to the heart with the camera as we feed this one, put the IV in his right arm. Worked I think on the 2nd try. Good to go. Start surgery! The 3rd lead is not an easy one to put in. Well in my case anyway. Got to one spot and had a hard time to move it any farther, finally got past that. Then every position they tried pulsed the nerve for my diaphram (like major hiccops) finally had to call it a day after 5 hours, with 3 people trying to place the lead in the best spot for me. Close me up and try again.

Paceing set at about 100%

Feel better than before, still recovering, Battery included!

Board Creator
Posts: 655
Joined: August 26th, 2005, 8:59 pm
Location: Southern California

Post by Shelby » September 22nd, 2006, 1:45 pm

From Judieanne:
Hi there. Thought I would introduce myself. My name is Judy and I am from Indiana. My heart problems started in 1998 with a heart attack which I didn't even know that I had. I had been painting the living room for 2 days on a ladder and when I went to work, I was sitting at my desk complaining that my neck and shoulders hurt. Little did I know? My husband was working out of town and came in on Fri. bringing his laundry home. When I bent down to pick it up off the floor, my chest hurt. Thought I was coming down with a cold. Needless to say the next two weeks were not good for me. I could not lie down to sleep at night and met my husband in the drive when he arrived back in town. Said "take me to the ER. I don't feel well." I was suffering from CHF. Within days I was scheduled for a heart cath where they found one artery blocked 80%, one blocked 75% and the other one was completely closed. My father died at the age of 39 from a heart attack.

Within two weeks I was back in the hospital for angioplasty and had a stent put in. I had a heart pump in one leg and the sheath from angioplasty in the other leg. Not a good night. But got along very well. Have had a couple of heart caths to see what was going on with myself in the last couple of years, but nothing else. Other than the last cath, where my Dr. suggested to my husband, sister and daughter that I needed an ICD. Didn't ask my opinion on the subject. So. on Aug 2nd I received my ICD. I have been really paranoid about this implant because I pulled a lead loose and had to have a second surgery the next day. Hope I never need the thing, but it's there for insurance purposes. My Dr. said I would not make it to town if I ever had another heart attack. My meds are captopril, coreg, lasix, and lipitor for the heart. Other meds for my sugar.

I am married to a retired pipefitter/plumber and we have two grown children. My son is happy with a microphone in front of him(he works part time on the radio) and at a nursing home. My daughter is a teacher (raising two girls (6yrs. & 8yrs.) and is married to an Electrical Engineer and he is a Major in the USAF. They are stationed in Albuquerque where I make my two flights yearly for the girl's birthdays. I am headed out there in a couple of weeks for birthday and Balloon Fiesta.

I work in our local mall at a clothing store as a retail clerk. I worked 12 years at the Information Center in the center of the mall answering questions, making gift certificates and handing out wheel chairs. I first started out in the mall as the Easter Bunny in costume having pictures taken of me and the kids at Easter. Was a lot of fun , but hot under the outfit.

Thanks for listening to me. This is a great site. Judy

Welcome Judy! :D
Afraid to post here? Remember:
"Some people think only intellect counts...but the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~Dean Koontz

Board Creator
Posts: 655
Joined: August 26th, 2005, 8:59 pm
Location: Southern California

Post by Shelby » September 22nd, 2006, 2:10 pm

From PaulDC:
Hi, my name is Paul. I am 42 years old with a wonderful wife and 4 children, ages 3-15 (all boys)…. Yikes Maybe that’s why I was sent over the edge.(HAHA)I live and work outside the Washington D.C. area and currently reside in Maryland. Its great that I finally joining this extending family and I look forward to improving my knowledge and hopefully passing along some of my own experiences.
On August 23, 2005,(My Second B-Day) I experienced Sudden Cardiac death while I was busy at work on a Tuesday morning. As I lay helpless and Breathless, no one in my office administered CPR until the Paramedics arrived a few minutes later. Its surprising, with 140 employees in my office, nobody knew how to administer CPR? Thank god that the Fire Department was just around the corner from my office. I owe everything I have to these brave Paramedics for saving my life. I believe I had stopped breathing for 4-6 minutes until the Paramedics arrived.
I now have a condition called “Short-Coupled Torsades de pointes Ventricular Tachycardia”. After waking up from my coma and regaining some of my memory, I was like, what the hell is this? Short-Couple what??? It took me months before I could even pronounce, remeber and say the whole diagnoses. Apparently “Short Coupled Torsades de pointes Ventricular Tachycardia” is extremely rare and not to many people have been diagnosed with this condition. I am still wondering if this is a good thing or not? I have learned quite a bit from my incident and previously didn’t know the difference between Cardiac Arrest and a Heart attack. I am still trying to learn as much as I can about not only my condition but also conditions of the heart as it relates to cardiac arrest problems. I had a Medtronic ICD unit installed on Sept. 3, 2005. I am no longer a virgin and received my first and only zap so far in January of this year. Boy, that was an eye opening experience at 2:00 am in the morning.
Its great joining this group and I look forward in being an active participant in your discussions. I have to forewarn all, I am a jokester and I like to have fun on top of my serious side. With me residing outside of Washington D.C. I enjoy, Redskins football (Even thought they are 0-2 so far), politics and now, heart topics.

"Short-Coupled Torsades de Pointes Ventricular Tachycardia" - ICD Implanted 09/03/05
...whatever time I've got left now belongs to the big fella uptairs - Ronald Reagan

Welcome Paul! :D
Afraid to post here? Remember:
"Some people think only intellect counts...but the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~Dean Koontz

Board Creator
Posts: 655
Joined: August 26th, 2005, 8:59 pm
Location: Southern California

Post by Shelby » September 22nd, 2006, 2:21 pm

From LucyA:

I'm Lucy, i'm 25 i live in Reigate, Surrey (that's the UK!) I was diagnosed with ARVC in Apr 06 after family screening. We lost my brother, 25, to undiagnosed ARVC in Jan 06, which was discovered on his post-mortem, hence the checks.

Had ICD implanted in May 06. Had had no real symptoms except a few palpitations that i'd ignored - doesn't everyone until something happens? I'd fainted on a horse when i was 15 and was diagnosed with an over-active thyroid, but they now say it could have been my heart, they just don't know. Makes you think that if they'd looked closer at my ECG then maybe my brother would be alive today - however i could beat myself up over this but there's no point (My dad's doing it anyway Sad )

So i'm kinda new to this ICD thing but have had a shock! Once again i was horse riding, nothing major, in fact hardly out of breath, when BAM! Spent 3hrs on a sat night in local A&E being checked as it was first shock, then went to see my Dr at The Heart Hospital in London for a download. Thankfully it was inappropriate and they've upped mymeds - it wasn't painful (except when it went off) but i sure don't want another one!

So that's my story - oh and i teach a class of 9 and 10yr olds who are really interested, so maybe i can at least inform a few about looking after your heart!

ARVC diagnosed Apr 06, ICD implanted May 06, on sotalol, ramipril and levothyroxine (thyroid removed Aug 04 - just to complicate things!)
Welcome Lucy! :D
Last edited by Shelby on September 22nd, 2006, 2:23 pm, edited 1 time in total.
Afraid to post here? Remember:
"Some people think only intellect counts...but the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~Dean Koontz

Board Creator
Posts: 655
Joined: August 26th, 2005, 8:59 pm
Location: Southern California

Post by Shelby » September 22nd, 2006, 2:23 pm

From Micsobo:
Mike here. I've already posted to the main forum introducing myself. In more detail though I'm 54 and retired. I retired from trucking in 1998. What's that? I was only 46 years old ya say?
Well I was diagnosed with acute orthostatic hypotension followed by syncopal episodes. Some of you already know what that is, but in laymens' terms if I got up to fast the lights would go out. My company didn't know about it, but they would probably have found out. So when I got my 25 years in I opted for the early retirement. The cardio myopathy diagnosis came last year in August. It was like happy birthday Mike, Oh and by the way you have heart disease. WOOHOO!! The next thing you know I'm the proud owner of a shiny new ICD.
Anywho enough about that. I live in da great city a Chicaga and am a loyal Cubs fan, which might be linked to my first shock coming last monday, no wait they didn't get swept by the Pirates until after I got shocked, losing 2 games in the 9th inning. Thank you Ryan Dempster. I better get off this subject before I get shocked again.
I also play a lot of golf and am slowly getting my butt back to the gym. Good food, movies, theater, and reading is a given, and that's Mikes likes in a nutshell.
Hope to hear from some of you .
Mike Sobczak

Welcome Mike! :D
Afraid to post here? Remember:
"Some people think only intellect counts...but the functions of intellect are insufficient without courage, love, friendship, compassion and empathy." ~Dean Koontz


Post by oldsparkey » September 29th, 2006, 8:43 am

Good Day to everyone....

I am Chuck Littleton (Oldsparkey) and was introduced to these devices in 1993. October 29, 1993 I had three Cardiac Arrests at the Sheriffs Office and then enjoyed an extended visit at the local hospital ER.

After doing everything he could do to me the ER Doc walked out of the ER and told my Wife, The Sheriff, Judges and about half of the department that I was dead.

The nurse was folding me hands over my chest, getting ready to send me to the freezer when I squeezed her hand, The nurse called him, after he found out I was still here, he told them the news and said that if I survived that I would never be normal. Both the Wife and the Sheriff in unison told him that I never was normal.

Three days late I came back to the land of the living and then had the 1st unit implanted. Since then I have had three and am looking forward (in the close future) to the 4th.

After the 1st one was implanted (6 months later) I paddled 85 miles in 12 days thru the Everglades of Florida and have continued paddling any good looking water I can find, just like life was before all that fun at the ER. Except today is better ... I retired in 1998 so I have all the time I need.

"O" .. I got the handle of oldsparkey from my camping buddies. One day out camping the fish had lockjaw, no one could catch anything not even a head cold, one of the guys said .. Throw chuck in the river and when his unit goes off the sparks will get all the fish up and down stream, then we just net all of them.... From then on I was oldsparkey. (Camping buddies ya just have to like them)

1. I am a Retired Deputy Sheriff , 27 years with the department.
2. Retired and at 62 drawing SSI along with a retirement check. It sure beats working.
3. I build wood boats for my enjoyment and help others do the same by computer, when I am not out paddling and camping.
4. I celebrate two birthdays .. The real one in December and my 2nd one in November.

Silver and Oklawaha Rivers

Chuck. southernpaddler.com


Hi to all

Post by Becky » October 15th, 2006, 9:48 am

I'm new here. Will have an AICD (cardiac sarcoidosis) placed under general anesthesia in a couple of weeks. Was suppose to have had it done Oct. 11 but had some abn bloodwork (factor 8 and Von Willebrand) so EP doctor cx until I see hematologist (this week). THEN the strangest thing: I had a follow-up for an eye appt also (had seen the eye dr 2 weeks prior for a sarcoidosis flare) and found out that I also have "narrow angle glaucoma" (probably r/t the sarcoid). The significance of this was that had I gone under general anethesia I would have been in big trouble (per my eye dr) and lost my sight. This glaucoma thing was new and had not been there 2 weeks ago. As I go into this AICD procedure I'm scared. I haven't had an EP test but did have a 30 day PDS event monitor that showed A-fib/flutter and some other irregularities (no V-fib/tach). I also had a cardiac stress test 2005 that showed evidence of cardiac sarcoid. Kicker was my irreg heartbeats happened as I was being decreased (April 2006) on my daily prednisone (been on it over 2 yrs) and that also pointed to cardiac sarcoid. My prior cardiologist had told me all was ok but I knew something wasn't right so asked for my office notes/tests results that I was going to be taking to the Johns Hopkins Sarcoidosis Clinic in July. That's when I saw the abnormalities. My new cardio (Tampa) got me in right away to see an EP dr who agreed with the JH sarcoid dr and said to get the AICD asap. Since I've never passed out and never had documented V-fib/tach I didn't think it was a huge enough problem to get an AICD. But I am trusting my new drs to do what is best for me. I guess the scariest part is the general anesthetic (been there done that before) and what my chest will feel like when I awake. It's scary to think they have to put you in a bad rhythm and shock you out of it to test the thing. I'm wondering if my chest will hurt after this is done. I'm grateful for the AICD but just scared. This site is great and I kinda stumbled upon it. Thanks for any info you can provide. I've haven't worked since Sept 2005 when sarcoid nodules/infiltration advanced in my lungs and was causing increasing SOB. I'm also diabetic (3 different insulins r/t the longterm steroid use r/t the sarcoidosis) which makes me wonder about infection and healing time along with many other health issues.

Becky :)


Post by Christine » November 10th, 2006, 9:14 pm

Hello all... I'm ever so grateful to find this site!!

My name is Christine, a 38 yr old rural Pennsylvania transplant to the Detroit area. Our little family consists of myself, the most beautiful person in the world (my partner Dawn!) and our two kittens, Rowan and Raen. When I'm not being implanted, I usually sing in a community choir, love to camp, ride a motorcycle, read, write, and relish the amazing things this world has to offer!

Two months ago I started having runs of v-tach. It was assumed I was reacting negatively to a medication and left at that. About a month ago I got a run that wouldn't quit at work. They assumed I was reacting to chemical fumes and took me to a clinic, who called EMTs. I wouldn't be upright at the moment were it not for the EMT who hit me hard & fast with lidocaine. Apparently I had arrested sometime in there too.

I was transported to a second hospital where I had every test they could think of... echos, tee, cath, ep, ct... y'all know the drill. After much fuss they came up with "congenital left ventricular aneurysm." From my own research it appears to be a bit rare... it would explain them all freakin over my pictures lol! I was told I was being given an ICD to correct the vt, and that they were leaving the aneurysm, the size of a ping pong ball, intact.

So its 3 1/2 weeks since implant, a Medtronic Entrust. Y'all are scaring me with all these recall stories! And nobody said one durned word about "zap storms" yiiiikes!!! It is REALLY good to hear other folks' experience however!!!!

It was official this week that I'll be losing my job, there isn't anything I can do in there within my weight restrictions. I think its all finally starting to sink in, and I'm still a little freaked by the whole thing... hearing ambulance sirens go by outside still kinda shakes me up, things like that. And NO I'm NOT looking forward to getting shocked!! I AM looking forward to hearing more from you folks though, thanks for listening!! I'm the stubborn redhead lol



I'm on board!

Post by Ginny » November 11th, 2006, 4:48 pm

Hi Everyone!

I’m Ginny, mother of Dave, 19 and Jessica, 23, and wife of Jim. I’m happy to be here!

In 2004, when Dave was 16, he was diagnosed with atrial fibrillation and was cardioverted. At his six month check-up, it was discovered that he had Brugada Syndrome. All four of us were screened and participated in the genetic study for Brugada. It was my husband’s side of the family that carried the gene. Within a few weeks, both my son and husband were fitted with Medtronic ICDs. My husband has a Medtronic Intrinsic Model 7288, and Dave has the Marquis VR Model 7230CX. Jessica now lives in Boston, where she’s a grad student at Boston University. Dr. Brugada (Ramon, my husband’s doc) has encouraged her to get an EKG a couple of times a year for him to review just in case. He reminded us that she has the exact same DNA make up as her brother so it’s good to be on the cautious side.

Check ups for both of these guys have been okay so far. No need to share about Dave because he can do that here himself (Yup, he’s that Dave)! And Jim isn’t the type to post on a forum so I’ll be respectful of that. Jim is probably in atrial flutter and is likely facing another ablation after his upcoming check up. Oops. Where’d that respect go?

Anyway, that’s how I got here. I maintain a blog about Brugada, at least our experience. I haven’t been as attentive to it as I was in the beginning and promise to get back into it soon. I try to check for any new information that’s being discussed or published about Brugada. When I find something, I share it. Anyway, the early posts on the blog give more details of our journey.

Everybody is doing well these days. Dave’s a college student, Jim runs his own business and I work for the local Chamber of Commerce as the coordinator of their Community Leadership program. In my past life I’ve run child care centers, worked in higher ed administration, and done some grant writing.

Uniquely me - for some reason I’m drawn to trees, no matter where we travel, I always keep an eye out for them. Love to photograph them, read about them, study them and of course, plant them which I do whenever called upon to help the local “tree huggers”. My quest is to someday get out to California to see the sequoias and redwoods. Someday…


Post by Jackie » November 18th, 2006, 5:10 am

Hi everyone
I'm Jackie and I live near Dover in the UK. I've registered with this site as my mum has recently (July 06) had an ICD implanted.

Mum had her first bypass surgery at age 45, the second one 13 years later, then at age 64 she was diagnosed with breast cancer. Initially they were talking about a mastectomy but, because of her heart condition, they decided to try to reduce the tumour with radiotherapy before operating. Luckily, it worked and after 6 weeks of radiotherapy, the tumour had disappeared so there was no need to operate at all.

My mum is now 72 years old and, unfortunately was diagnosed a few years ago with multi-infarct dementia. She's well aware that she's forgetful and it upsets her far more than any other problem she's ever suffered with. Apart from that though, she's very positive and grateful for all the treatment she's had over the years.

Three years ago, whilst on holiday in Rotterdam, mum suffered a bout of VT and was rushed to hospital where she was cardioverted. On that occasion, it only took one 'zap' and she was fine. But at the end of June this year, she was again rushed to hospital with VT and was cardioverted 4 times in as many days. For the first few days, they were very concerned about her low blood pressure and poor kidney function (brought about, I understand, from the VT). She continued to go in and out of VT but the hospital decided not to cardiovert her anymore as long as she maintained a reasonable blood pressure. After 2 weeks, mum was transferred to St Thomas' hospital in London where she was implanted with a Medtronic Entrust ICD.

She had her first interrogation a couple of weeks ago and was told that she had an episode a few days after she came out of hospital. Apparently the device had detected VT, had delivered a 5 joules shock and it sorted her out. This all happened in the early hours of the morning and she either slept right through it or, because of the dementia, had forgotten about it by the next day, although my dad is sure that she would have woken him if she had felt anything funny happening in the night.

As you can imagine, our whole family are completely in awe of the ICD and so very grateful that it already seems to have saved her life.

None of us had heard of ICD's before but I've done a lot of research on it since mum's had hers. Out of everything I've read on the subject, this site seems to be the most informative. Although I must admit to being a bit freaked out reading all the stories of electrical storms that some of you guys have suffered. I really don't know how mum would cope if it happened to her but we make sure that she is never alone because she forgets that she has the ICD and probably wouldn't understand what was happening if she had another 'zap' while she's awake.

Anyway, I just wanted to say thanks for such an informative (and fun) site. The way you all support each other is fantastic and I'm sure a lot of the members of this site get more reassurance here than they do from their medical teams.

Best wishes to everyone, stay well.


Post by ipernick » November 19th, 2006, 9:13 pm

Hi everyone my name is Ira. I am 37 years old and am closing in on my 1st anniversary of my ICD implantation.

I knew nothing of any problems until I passed out driving to work one day. At the hospital they eventually did an EP study and I went into VFib and had to be shocked externally. Soon after I was given my device.

While it has been an uneventful first year I have a lot of fear and anxiety and am looking to find out how others have dealt with similar feelings.

I am a NYC High School Principal. I have a wonderful wife and two great kids, 6 and 2.

Post Reply